Nothing is a waste of time if you use the experience wisely.
Rodin No book about teaching clients with chronic illness would be complete without a chapter on noncompliance. What is it and what can nurses do about it?
DEFINITIONS
Noncompliance means different things to different nurses. I was asked to speak to a group of nurses doing chronic disease management for a major insurance company as part of their in-service education. Out of a list of topics concerning diabetes, they chose “the noncompliant patient,”
as I thought they might. There is nothing more frustrating to a health care professional than to be rebuffed by a client after trying so hard to convince him or her to do what the nurse knows he or she ought to do to stay healthy. I had spoken to this group previously, and they knew that I had type 1 diabetes. Their list of defi nitions of what constituted non-compliance was very enlightening for me, as I fi t many of them. They included the following:
• not following physicians’ orders • not following the diabetic diet • not taking medications as ordered • not losing weight
• not testing blood sugars as often as requested • not exercising as prescribed
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On the other hand, my defi nition of noncompliance is “a knowledgeable and conscious decision by a person to reject all help and a total refusal to try in any way to do anything that might be helpful in preserving his or her life and preventing complications, both acute and chronic. In other words, a decision by the client to cause his or her own eventual death.” No one can be helped as long as he or she feels this way. All a nurse can do is let this person know that you are available to help if and when the person changes his or her mind.
Linda Carpinito (2002) in Nursing Diagnosis: Application to Clinical Practice gives a different opinion. The diagnosis of noncompliance describes the client who wants to follow the medical advice given but cannot because of physiologic or situational constraints such as lack of understanding, paralysis, or fi nancial defi cits. She specifi cally states that this diagnosis should not be used if the patient has made an informed decision not to comply (Carpinito, 2002).
Although, since 1993, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) requires all health care agencies to document that patients and families are taught what they need to know to participate in decision making concerning their health, there is little accountability on the patient to demonstrate behavior change based on this teaching (Rankin, Stallings, & London, 2005). Maybe that is what frustrates nurses so much. They do their part by teaching and yet some clients don’t seem to want to participate in their own care. Some of the reasons why noncompliance occurs can be summed up under the two categories of “can’t” and “won’t.”
FINANCIAL CONSIDERATIONS
Under the “can’t” category there are many valid reasons why clients do not comply with instructions given. Diabetes is a very expensive disease.
Blood glucose strips cost a dollar or more each, which may limit the number of times a client is able to test his or her blood sugar. Clients are also frustrated when they “waste” a strip if they get an error message instead of a glucose number and may be reluctant to use strips to do glucose controls on their meter. Human insulin costs $50 a vial, and the cost is more than
$60 for newer human insulin analogs, such as Humalog, Novolog, and Lanthus. Even with a prescription drug card, co-pays can be substantial.
Client Noncompliance / 145 This may infl uence the number of injections and amount of insulin taken.
The same applies to newer oral agents prescribed to control diabetes.
It is embarrassing for some to admit they cannot afford to comply with medical orders or that they need help seeing or taking medications. This is especially true of older clients. Nurses can help them to troubleshoot these diffi culties by asking open-ended questions about how they manage their health in a concerned and respectful manner. Many drug companies will provide medication with a physician’s prescription to those who qualify for such assistance. Clients and/or family members can be directed to the Web site http://www.pparx.org for the Partnership for Prescription Assis-tance. (See chapter 4 for other helpful Web sites.) Many clients reuse sy-ringes and lancets without adverse effects.
PHYSICAL LIMITATIONS
Clients may also not have the manual dexterity or visual acuity to use the meter they have or may not accurately draw up the correct dose of insulin, especially if two insulins are mixed, which often leads to uncontrolled blood sugars. Observing the client using his or her meter or drawing up insulin will provide the nurse with valuable insights as to what diffi culties exist for this per-son in his or her self-care. The client and/or his or her family can be directed to the American Diabetes Association resource information guide at http://www.
diabetes.org/diabetes-forecase/resource-guide.jsp for more appropriate meters that require less manual dexterity and have larger readouts. Pharmacies sell magnifi ers that slide over syringes, and there are 30-unit syringes with more space between the lines, which increases the accuracy for small doses of insu-lin. If clients meet the Medicare criteria, a referral to home health agencies can be made by the physician. A home health nurse can prepare a week’s supply of insulin in syringes that are then refrigerated and/or prepare a week’s supply of medication in pill containers for this purpose. Pharmacies also provide these services and deliver the medication to the patient free of charge.
DEFICIENT KNOWLEDGE
The most common reason for lack of compliance under the “can’t”
category is lack of understanding. Too often, nurses make the assumption that a client with long-standing diabetes has learned what he or she needs to know. With short stays in hospitals, the initial instruction after
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the diagnosis of diabetes may have been overwhelming to the client and family and most of it may have been either not comprehended at that time or forgotten in the intervening years. Clients do not need nurses to repeat what was not understood the fi rst time. Nurses should ask about how they deal with their diet, medication, and exercise to assess what is understood and what needs clarifi cation and amplifi cation.
LITERACY
Another reason for client ignorance concerning diabetes self-management is literacy. A client with a low literacy level can not comprehend most printed educational materials and may not understand the terminology used in educational videos. Assumptions are made that adults have a high school education, and teaching is done at that level using vocabulary and pamphlets that may not be appropriate. When clients fail to ask questions and avoid participation in discussions about their diabetes management, do not assume they are disinterested, have a fl at affect, or consciously plan to disregard advice given. DeYoung (2003, p. 99) gives other behavioral examples of low literacy to watch for:
• not reading or even looking at printed material given
• stating that printed material will be shared with family members later
• claiming the need for eyeglasses that are broken or left at home • stating they have a headache or are too tired to read over printed
material
• mouthing words as they attempt to read anything written
My own mother, who dropped out of high school at the beginning of her junior year, hated to read and threw out printed instructions that did not have corresponding pictures. This did not diminish her intelligence but did signifi cantly alter how she learned best. I was with her when she was admit-ted to the hospital once and watched as she convinced the nurse to fi ll out her medical history for her. After stating her birth date correctly, she then pro-ceeded to add her age, 86, to that year to answer the question about today’s date. The nurse misunderstood and said it was not 1986. I interrupted and told the nurse to wait until my mother fi nished her calculations. She got the year correct and knew it was close to Christmas. Not bad for someone who
Client Noncompliance / 147 had been homebound for two years and never read the newspaper. It takes a great deal of assertiveness and self-esteem to interrupt a nurse or physician and ask that the discussion proceed in a simpler format. This is often too much to expect of older adults, immigrants with minimal English language skills, or those with less education. Even when asked if they understand what has been said, they verbalize understanding by nodding their head or saying,
“yes.” Why not request that they demonstrate understanding by asking them some what if questions? “What if you started to sweat and shake and were confused about what was happening to you? What would you do?” This encourages interaction, helps evaluate their vocabulary usage and problem-solving ability, as well as notes their understanding of the teaching on hypoglycemia. This must be done in a respectful manner so the client does not feel that the nurse is talking down to him or her. It is much more diffi cult to teach or interact with someone “not like us,” including differences in age, education, culture, and experiences. It truly puts our ability to be understood by others to the test, a challenge we must accept if we are to reach others and have a meaningful impact on their lives.
CULTURE
Cultural differences can be huge obstacles to compliance with diabetes management. Culturally sensitive questions must be asked, using an interpreter if needed, to gather the data necessary to understand any barriers to compliance. “Cultural awareness is the process whereby the nurse becomes respectful, appreciative, and sensitive to the values, beliefs, and problem-solving strategies of a client’s culture” (DeYoung, 2003, p. 79). We need to examine and recognize our own prejudices concerning other cultures and work at discarding them or, at least, blocking them from interfering with the care we give to others. Until nurses understand that they have those bi-ases, they will not see how these biases interfere with the appropriateness of how they deal with members of another culture. By asking questions and gathering data through reading, workshops, or the Internet, nurses can begin to understand what cultural values and beliefs might interfere with client compliance. This openness to learning about a client’s culture will help to break down barriers to meaningful communication. This open communica-tion may need to start with the interpreter who may not translate everything that we say because he or she may be offended by or misinterpret instruc-tion due to his or her own cultural bias. Speaking fl uent English does not
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negate cultural upbringing. My father immigrated to the United States from Quebec, Canada, when he was 16, learned to speak English, and formed his own construction company. Despite this, his cultural beliefs concerning the need for preventative medicine and routine visits to doctors and dentists remained as it had been growing up on a farm in Canada. Doctors were called when someone was dying. By the time he saw a dentist for the fi rst time in his 30s, he had no back teeth (all pulled out the old fashioned way with a string tied to a door knob). I have my wise though less educated moth-er to thank for insisting that my brothmoth-er and I receive routine medical and dental care. When my father was diagnosed with lung cancer, resulting in a lobectomy and then radiation therapy, he asked no questions of the doctor.
After talking to him, I discovered he had no understanding of how ill he was or how radiation could affect him. His oncologist told me that patients only ask when they are ready for the information. With my father’s cultural back-ground, he believed that the doctor would tell him what he needed to know.
There was a large disconnect. On my insistence, his physician agreed to see my father again to explain in nonmedical terms what my father’s situation was. However, he never asked him to repeat his understanding of it. On the way home, I did that using open-ended questions. That is the only way to evaluate another person’s understanding, especially if he or she comes from a different cultural background.
In order to obtain culturally sensitive health care information from clients, DeYoung (2003) suggests variations of the following questions be incorporated in the interview:
• How do you explain the problem you have?
• What do you think caused this problem? (This is a question that should be asked of everyone.)
• When did it start?
• How does it make you feel?
• How bad is it?
• What are you afraid of most about this illness?
• What diffi culties has it caused you at home, at work?
• How do you think it should be treated?
• What are the most important results you hope for from this treatment?
All of these questions may not be necessary in order to evaluate differences in cultural beliefs that could pose a communication problem
Client Noncompliance / 149 between a health care practitioner and a client. One answer may lead to other more pertinent questions, but whatever is asked must be done in the spirit of acquiring the necessary information that will make teaching, learning, and disease management more likely.
RELIGIOUS CONSTRAINTS
If the client’s religious beliefs prevent him or her from following through with prescriptive measures to control blood sugars, the client may not be compliant. Again, open-ended questions concerning how religious beliefs impact treatment of diabetes might yield useful information. A client may believe this diagnosis is a punishment from God for past sins. This may lead to a lack of compliance with the treatment regimen because the belief may be that he or she must suffer and that attempts to control the disease are defy-ing God’s will. Prevention of complications may be a totally unholy pursuit.
In high school, I actually had a nun preach about sinful touching of breasts and looking at oneself naked in the mirror. I didn’t know much about breast self-exams at the time, but I have often wondered about the rate of breast cancer in the members of that order at that time. Other religious beliefs might infl uence a client to pray more or give service to others rather than work at something as self-centered as diabetes self-management. Some religions are distrustful of modern medical practices and believe in the power of spiritual healers and their remedies. Women in some religions and cultures are sec-ond-class citizens and may not be deemed worthy of the time and expense that control of diabetes entails. They may need the express permission of a male relative (husband, father, brother, son) to access the health care options that will keep them well. Nurses need to ask good questions to obtain this information and understand the constraints that may prevent compliance.
There may be subtle ways to work around these religious constraints and free the client to make better self-management choices. Just because a nurse does not agree with something that is not the norm, he or she must still deal with its reality in the client’s life.
SUPPORT SYSTEM
Whether or not a client with any chronic disease can cope mentally or phys-ically with the regimen to maintain glycemic control depends a great deal on his or her support network. Negative interactions with family members
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and friends can make or break the greatest resolve to do what is needed to live a fulfi lling life despite diabetes. In “ ‘They care but don’t understand’:
Family Support of African American Women with Type 2 Diabetes,” the authors interviewed several women who perceived a lack of understanding of their needs by members of their social network ( Carter-Edwards, Skelly, Cagle, & Appel, 2004).
I experienced this after my own diagnosis with diabetes. Family and friends may want to help but do not understand the disease or know what the client needs from them. Nurses can help explain the disease process and treatment options, but they need to empower clients to ask for what they specifi cally need from each of their support persons. Sometimes it may be to back off or to treat them as they had prior to the diagnosis.
It may also include avoiding tempting foods or drink that the client needs to minimize. No one wants to be treated as fragile or different, but pre-tending one does not have special needs after being diagnosed with dia-betes is not an option. Helping clients to verbalize what irritates them and planning how to dialogue with signifi cant others is useful. Asking, “How would you like your family/friends to treat you?” is a start. Then, “What can you do to make that happen?” would be the next step. Trial and error is a reality, and the more options nurses can help the client realize, the closer he or she might come to getting the support he needs.
Now for my favorite category for noncompliance—the “won’ts.” When a client refuses to follow prescribed advice and you have ruled out all of the areas covered under the “can’t” category, the following issues should be explored. Some of these reactions to a diagnosis are part of the grief stages described by Dr. Elizabeth Kübler-Ross and discussed in the intro-duction to this book using personal examples. Some are based on a client’s personality and life experiences.
DENIAL
Denial is an unconscious defense mechanism that protects us from a threat to self. In order to deal with the perceived loss of health that a diagnosis of diabetes brings, most people react with shock and denial. By refusing to accept this diagnosis, getting a second opinion, or remaining in a dazed state, the mind bides its time and allows for reality to sink in slowly. When we are ready to begin coping with this new entity, we can then listen to instructions and learn what we need to do. This is normal coping strategy
Client Noncompliance / 151 and needs to be indulged by healthcare professionals, at least for a while.
During this time clients and/or family members can be taught what is needed to improve the immediate health problem or threat to life. They can learn to test blood sugar, give insulin, or take oral medication. What they may not be able to grasp is that diabetes is a chronic illness and that lifestyle changes and medication are for life. Denial becomes pathologi-cal only when it persists beyond this initial stage and interferes with the process of acceptance so necessary in achieving good glycemic control.
Health care providers may contribute to this by stating that type 2 diabetes is the “mild” form, nothing to worry about. Clients may comment that they have a touch of sugar or that they don’t really need to worry about what they eat or about losing weight. Taking oral agents to control diabetes is like taking a vitamin pill. It is “no big deal.” This attitude increases resis-tance to using insulin because “going on the needle” works against their denial. I have spoken to several clients with type 2 diabetes on oral hypo-glycemic agents or experiencing neuropathy and cardiovascular compli-cation indicating years of hyperglycemia who state they have never been diagnosed with diabetes. Denial is very powerful and diffi cult to break through. Nurses can talk about good health care practices for everyone and focus on improving whatever clients are willing to deal with, like the numbness and tingling of feet or the decrease in circulation. Blood sugar control will improve or at least prevent further deterioration of their current condition. Giving them handouts concerning diet, exercise, med-ications, and weight loss that mention diabetes may be a nudge in the right direction. Listening to their thoughts about diabetes may uncover personal fears that they will become like a neighbor or relative who suf-fered and died of diabetic complications. Knowing what is behind this prolonged and unhelpful denial may give the nurse insight and informa-tion with which to formulate an offer the client can’t refuse. If a client wants to do something specifi c with his or her life, like a career, family, sports, or longevity, he or she may fear that acceptance of this diagnosis will make it impossible. Now you have a tool to motivate the client to work at control in order to improve the odds that his or her dreams will be realized. Most people need to work at one thing at a time. Help the client choose which area he or she is willing to deal with fi rst. It may be quitting smoking (diabetes and smoking is a deadly combination). This might lead to brisk walking because he or she has more energy and lung capacity, which usually results in weight loss.